After two and a half years Lissa and I remain stubbornly devoted to each other and to finding a way to live with ALS and prevent it from destroying us and our relationships to family and friends.
I am humbled by the love and gestures of support we have received so far. Our independent natures make it difficult to acknowledge and accept ongoing help, but we are learning the delicate art of saying “Yes and Thank you.”
Lissa has been through a number of challenges in the past few months and has met them all with her usual grace and wit. She is battling more opportunistic infections and constant fatigue as her breathing needs require being on her ventilator sixteen hours a day. The coup de gras came when her feeding port dislodged in the middle of the night which triggered an ER visit to have it reinstalled. We both remain a bit traumatized by that event. It fell hard upon the heels of losing our beloved dog Twyla to heart disease. She was a loyal companion to Lissa and we are missing her constant love and playfulness.
I still feel at times we are living in a shared nightmare and one morning we will awake to our former life as LissandBill. Childlike thinking perhaps, but occasionally we both have dreams about Lissa walking into the room and saying, “Look ,Honey, I’m walking!” as she breaks into one of her signature character dances she perfected over the years. Always the consummate comedian, wordsmith and classic Femme Fatale, lighting up the room wherever she goes.
We are trying to remain open and flexible to Lissa’s evolving needs. It does often seem that just when we get used to one new loss and adjustment, another challenge arises.
Relentless -- Like running for a train that always leaves the station, just before you arrive.
Not being able to work for the past two years is now also taking its toll on us financially. Medical bills, supply costs, caregivers, medications and daily living expenses are mounting as we struggle to keep ahead of the ALS learning curve and preserve some semblance of a normal life.
Lissa meets every new loss with aplomb and I marvel at her stamina and sheer will to overcome the gauntlet of daily obstacles she faces. Because she can’t move or speak, she has to type everything with her eyes. This allows her to still be able to express her unique point of view through her creative writing. Her determination inspires me to be a better person.
We have chosen to take this journey together in the comfort and safety of our home. The texts, occasional visits, photos and videos you provide are essential to keeping our
Many of you have asked how you can help. It truly takes a Village. We are doing another Gofundme round to help us deal with the mounting costs of Lissa’s care at home. For those of you who are in a position to help you can go to: GOFUNDME,
or the PayPal link under Donate tab on this site.
To any and all gestures of love and kindness we say,
“Yes, and Thank You.”
LISSA & BILL